Tuesday, August 30, 2011

Emergency preparation for kids with special needs (and nightmare scenarios)

When I go on a Max anxiety binge, as I do from time to time, I picture what would happen if there were a major emergency in our area (or in the entire country) and medical supplies ran low. Emergency preparation for kids is something a lot of parents think about, but when you have a kid with special needs, you think about it a whole lot more. You have to.

Max is on Trileptal (oxcarbazephine), to prevent seizures; without it, he'd surely have them regularly. This is how my nightmare goes:

Something awful happens—major earthquake, tornado, terrorism. Pharmacies run out of medicine. There is no Internet access, so I am not able to put out pleas for some. Soon, our supply of Trileptal is gone and Max has none left in his body to protect him from seizures.

My nightmare stops there, as it would be far too terrifying to imagine what could happen next. In reality, we have a five-month supply of Trileptal sitting in a kitchen cabinet. We have wills in place, with designated guardians (my sister and her husband). Dave's sister and her husband are good people, but that's about all the family we could count on. My mom's elderly. Dave's mother and her new spouse...ummm...I'll just heed that saying, "If you don't have anything nice to say, don't say anything at all."

With all the media reports that made it seem as if the world might end with Hurricane Irene, I had some Max anxiety. As it turns out, though, he wasn't effected. He eats a lot of cooked foods that go by the name of "spaghetti" and we got our power (and stovetop!) back on relatively quickly. I know that some kids with special needs can get wigged out by disrupted routines, but Max has been downright gleeful about sleeping in a motel. Therapists haven't been able to make it to the house because of closed roadways, but other than that, we're fine. No purple stuff was destroyed in the basement flood.

There's one major emergency prep thing I've been meaning to do. A few months ago, we went to a "Planning for the Future" seminar at Max's school. The presenter, who specializes in estate planning for kids with special needs, talked about having a "Letter of Intent"—a document that details all sorts of information about your child, in the case that both you and your spouse die and he is left with caregivers. The document had places to fill in doctor and therapist info, medical history, skill levels and more, an even a reminder to attach an IEP. It's on my (long) list of stuff to tackle; if you'd like me to email you a copy, just say so.

Ever have those disaster scenarios running through your head? What sort of preparations have you made for your kids in case of extreme emergency?


  1. I'd love a copy, thanks! marfmom at gmail dot com

    I've thought about that a lot recently. What if we have an earthquake? M is away from me for some of this therapies. How would he handle that? Would he take off running? He doesn't have any medications that he must have, but my husband is insulin-dependent, so we always keep a 3 month supply.

  2. I'd love a copy too! angel.dockendorf@gmail.com

    We are very behind in the whole guardian appointing/wills/trusts etc that goes with having children, and especially children with special needs. I was worrying the other night how anyone would know how to fold our son's blankie just right on his pillow to help him fall asleep if something were to happen to me and my husband.... Maybe this document will help us kick our plan into action. Thanks! (So glad that all was ok with you and yours during Irene!)

  3. Good info to have for all! Will you please email me a copy robert.hutchins@southtexasautism.org

  4. Very informative and life-changing I hadn't really thought about what would happen to me if my parents weren't here I'd better learn how to take care of myself

  5. Here are some other good resources:
    FEMA's guide on preparing and planning for people with disabilities.

    Emergency Preparedness for Families of Children with Special Needs -prepared by the Consortium for Infant and Child Health (CINCH) Children with Special Health Care Needs Work Grouphttp://www.chkd.org/documents/CareConnections/EmergencyPreparednessforFamilies.pdf

    Cincinnati Children's Hospital has put together a good list of emergency information forms you can download and use.

    It's also really important to have your child involved in some of the preparation if possible. Emergencies happen. You can prepare your children in non-scary ways. Show them the emergency supply kit you're putting together. Explain in simple ways why you're doing it. Test your fire alarm and let your child know what it means and what it sounds like. This is especially important for kids with sensory issues. What should your child do if he or she hears it? Yes, it's very loud, but what should we do if we hear it?

    Emergency plans should be practiced and practiced and practiced so that when something DOES happen, you and your kids know what to do.

    Also, about the emergency forms -- have multiple copies and make sure everyone who has anything to do with your child has a copy.


  6. I would love a copy- we're fairly new to this and frankly it hasn't crossed my mind at this point. slackermom78@gmail.com

  7. Would love a copy cllmnshan@aol.com

  8. I'd love a copy too; thank you! (andee.glenn at gmail)

    We are not nearly as prepared as we should be for an emergency, especially pertaining to Phia. I cringe when I think of it.

    Thanks to the earlier "anonymous" poster for the additional websites. I'll take a look at them.

  9. I would love a copy. Thanks! jjjstenger@gmail.com

    I, too, have had awful nightmares and "Yes" they always stop short of disaster.

  10. Great idea!! Please send me a copy - hadamon@gmail.com. Thank you so much.

  11. I would love a copy! paradisefound2001 at gmail dot com

  12. I would love a copy of the letter of intent. kimberly6@hotmail.com I have regular anxiety attacks thinking about what would happen if... (insert crazy senario here). I thought I was the only one! Glad I'm not crazy!

  13. please email me a copy. Thanks

  14. We've lived the disaster 3 times in the last year. I live in Christchurch, New Zealand and we have had 3 devastating earthquakes since September 4th last year. We still live in our house but it will most likely be demolished. With the worst earthquake in February we lost power, water and sewerage for 2 weeks. We still get quakes frequently. I never leave the house without plenty of food, water, clothing etc for Owen. I also make sure I've got enough oxygen bottles in storage in case we can't make it to the hospital.

    I really like the idea of that form you mentioned. What a good idea.

  15. The biggest planning for emergencies needed for us, is actually planning to conquer S's anxiety about emergencies. The fire alarm accidentally went off at school the other day and it took a good half an hour to calm him down.
    I can't even think about any of the other more serious stuff about wills/trusts etc.... but I know I really know that I should. Thanks for the reminder :-)

  16. That is such a good idea! Especially since the twins had been in school for a whole year before my mom clued in that they had started kindergarten...I imagine the smaller details aren't even on her radar. I would love the form please nerdgirlmom@gmail.com. Thank you! I hope your basement is all fixed up quickly, and I'm glad Max is handling it all ok!

  17. I am pretty lucky--I live within walking distance (well, it would be a hike, but I could walk it in well under a half hour) of a hospital. I wouldn't think twice of walking/biking if that was the only way to get there.

  18. Great food for thought.

    Would love to have a copy -


    Thanks, Ellen! And happy to hear all of you weathered the storm fine.

  19. Ellen--

    Glad that you all survived the hurricane.

    One of the things you said really caught my interest. You said that you had 5 months of seizure medication for Max. How did you get more than one month. I have often worried about this both for Samuel and myself. What would happen if we couldn't get somewhere to get our medication.

    Another suggestion for your readers, always carry a list of medications, doctors, pharmacist with you. When we travel, I put one in each carry-on and each piece of luggage.

    It also makes it much easier when you go to a new doctor. I just print out an updated copy and attached it to the forms, instead of having to rewrite all the information again.

    Hope your basement get clean soon and I am so glad your dad's stuff is safe. School supplies can be replaced, but not things like that.

  20. I'd love a copy of the form. Thanks! azimmerman@sumcd.org

  21. How did you get a 5 month supply? SHare pls!! My son takes trileptal but the liquid we get has to be used within a certain number of weeks (7 I think). Sam has never had a clear seizure but his EEG was abnormal.

  22. I'll mail out copies of the forms to everyone soon.

    We got a five-month supply of Trileptal by ordering through the insurance company's pharmaceutical plan. It's cheaper for them to get the stuff in bulk! Call up your insurance co. and see if they have a plan like that through which you can order in bulk.

  23. I'd love a copy too. EKDoolittle18@gmail.com. One thing we've done is to meet with an estate attorney and change our wills. Our attorney told us that Jake should never have any money in his name, but we can set up a special needs trust. That trust is "blind to medicaid" so it won't affect his eligibility for services (especially after he is 18). We also designated both a guardian (my husband's sister and her husband) and an executor of the estate (my brother). I may be using the wrong terminology but basically someone else besides Jake's guardians would be watching over any money left to Jake or to his special needs trust ensuring that money is being spent wisely (not that we don't trust my husband's sister), but I think it further ensures that good decisions will be made. You may not have another person you trust to do that. So in a nutshell, if my husband and I die, then all our money gets left to our second son except what goes into the special needs trust. We also had our parents change their wills in the event that we die at the same time then their money gets allocated that way too. Sorry - that was long winded but we didn't realize any of this until we met with some special needs consultants.

  24. I would love a copy. thanks!
    kristinasorenson @ hotmail dot com

  25. I would love a copy too. My email is miraclesmommah at gmail.com.

    We've already finished our will and the special needs trust but I had never thought to make a list of therapists and other basic info. I'm over here feeling like a goof.

    I worry a lot about what will happen if we don't have the right meds when hurricanes hit. At one point my daughter was even on oxygen and we had to evacuate. I didn't know where to get the cylinders from given that we usually used a local provider. Oh it was so nerve wracking! Everything turned out okay but it was hairy for a while. Thank goodness she was off of that when Katrina hit and we were homeless for a month!

  26. Ellen,
    Great post! I'd love a copy. Often we think of/are prepared for the short-term...not the longer term possibilities. lynnjmail@aol.com

  27. I'd love a copy please!

  28. I feel that we are so prepared for what Kyan needs now and meet his needs but we are soooo not prepared if something happens to us. I never even thought about explaining an IEP to guardians! Can you e-mail me your list? shanagonzalez@yahoo.com

    Thank You!

  29. I would like a copy of the emergency checklist, please! Thank you. Kidtoothdrlaura@aol.com

  30. I would like a copy of the emergency prep checklist, thanks!

  31. The US has strict anti terrorism laws in place for our safety. As a result, the terrorism rate in the US is VERY low. Its unlikely to happen. You're more likely to be affected by fires, floods, earthquakes, hurricanes etc.

    Can I have a copy of the emergency check list please. My email is thara5241@gmail.com. Thanks!


Thanks for sharing!

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